Should I Work During Lyme Treatment?

This time of year always reminds me of my former job in the exciting, crazy, and stressful mortgage industry. Why you ask? Because two years ago this month, I was laid off illegally fired from my job of eleven years, maybe someday I’ll be brave enough to tell that story.

The topic of continuing to work during treatment is important to consider when you’ve been diagnosed with Lyme. When I was diagnosed, I found lots of stories of people not working and on disability. I never found anything that addressed working during treatment. Continuing to work while undergoing Lyme treatments can be difficult, but I personally don’t believe it’s impossible, and I know two people who’ve worked during treatment.

A few things my old job required was working within extremely tight deadlines, being an expert at multitasking, having excellent written, verbal, and problem solving skills, providing clear communication to clients, and supporting junior staff. I was able to do ALL of those things fairly easily before starting treatment, and I often found the fast paced environment of my job exciting.

All of that DRASTICALLY changed after I began Lyme treatment. Since my diagnosis in 2012, I’d considered quitting my job numerous times because many days it was VERY difficult to work. Even getting ready for work was hard!

Unfortunately, prioritizing my health and well-being instead of my job was problematic for someone like me who has hardworking, midwestern roots. And I will stereotype here and say in general, Midwesterner’s put an extremely high value our jobs and working hard. We feel bad letting people down and have a difficult time putting ourselves first. Quitting because your sick isn’t our nature!

I know many have to quit working before they even know they have Lyme; however, if you’re like me, and have been working prior to being diagnosed, this post is for you.

If you’re an employer or co-worker of someone with Lyme, I hope this post will shed some light on why that person suddenly seems “off,” and I hope this helps you understand what they are experiencing.

I’m going to keep this post really REAL, so let me start off saying this …….

The treatment for Lyme, in my opinion, is as difficult or harder than chemotherapy. The protocols will be intense. I met someone who’d had Cancer before Lyme, and she said Cancer treatments were much less intense than her Lyme treatments. This partly may be due to society having compassion for those with Cancer. People undergoing Cancer treatments are encouraged to stop working and focus on recovering.

With Lyme, it’s not the same. There is very little knowledge of what Lyme is, how it’s treated, how difficult treatments are, and how long it takes to get better. I say this not to start a Cancer vs. Lyme battle, they are both horrible! I bring this up because many have no idea about the intensity of Lyme treatment or how long it can take to get better.

I am not saying this to scare you, I’m saying this so you will understand that treatments can be very difficult. I wish someone would’ve told me this when I was diagnosed. I had NO IDEA what I was in for! I thought I’d take 30 days of antibiotics and be better.

During treatment, you will probably take more pills in a day, than you ever thought possible! Sometimes, you will spend more time on the toilet, than you ever thought possible! Sorry….it is the truth! You will feel “sick,” and it’s NOT fun. Your life WILL change when you start treatment and most likely you will feel worse before you feel better. That’s the unfortunate truth!

The good news is, you can get better! Don’t think otherwise! Okay, back to the main point of this post 🙂

The following is an excerpt of a letter my sister-in-law got from her doctor to give to her employer, shortly after being diagnosed:

Emily has been diagnosed with Lyme disease, Babesiosis and Bartonellosis and is currently undergoing treatment for this multiple complex infectious disease syndrome (MCIDS). Treatment of Lyme disease involves various different chemotherapeutic agents that are addressed to reduce the chronic bacterial infection. The patient may undergo symptoms that may be compared to oncologic tumor treatment, with temporary neurocognitive effects, fatigue and exhaustion, as explained below.

Treatment duration is highly individual and is difficult to predict. During treatment, she may experience episodes of increase mental and physical fatigue, increased migrating joint pain and other various symptoms. These flares in inflammation caused by the treatment regimen and the bacterial die off may also affect her neurcognitive function. This encephalopathy can affect multiple functional areas of the brain, such as the frontal cortex, executive processing, language center, and areas that process emotions.

This can result in episodes of decreased ability to handle multiple executive actions simultaneously (multitasking), word mixing, or word retrieval delays, increased episodes of irritability and mild mood swings. She also may experience mental cloudation, delayed or slowed cognitive processing skills.

All of these symptoms are due to a complex interaction of inflammatory processes during treatment. They wax and wane for hours or days at a time, and the affected person has little control over these processes. It is usually helpful in working situations that employers are informed about these cognitive and other changes of their colleague are linked to a treatment protocol and that they are temporary.

Whew! Sounds fun, doesn’t it?

Okay, so based on my experience, here’s my list of things to do and/or consider when it comes to working during treatment.

I believe if your employer is supportive, you should try to work during treatment. First, try to keep your regular schedule and let them know you may need an extra break to take medication. My first protocol helped reduce many symptoms, and at first, I felt better. It wasn’t until about 3-4 months of treatment did I really start to feel worse. If you find it’s difficult to keep up with your treatment protocol, or you don’t have energy to keep up your regular schedule, try reducing your hours or working from home. Having Lyme can be very isolating, and keeping your job can be a great way to have regular human interaction. Hopefully your employer will be supportive, and that could be very helpful for your recovery!

I believe it’s important to notify your human resource department and manager that you’ll be going through treatment for Lyme. Whether you share this information with your co-workers is up to you. Like I said earlier, treatments will temporarily affect your ability to work at the same level you and your employer are used to. This might only be occasional, but it’s still important that your employer understand why you may not be performing at your best level.

Get a letter from your doctor explaining your diagnosis and what he/she expects during treatment. Give a copy of this letter to your manager and human resource department. Keep in mind, the average treatment time for late-stage Lyme disease is THREE years. Getting a letter is something I wish I would’ve done! I verbally notified my human resource department, manager, and co-workers, but reading the letter my sister-in-law received made me realize how much Lyme treatment affected my brain and my ability to do my best work.

During treatments, keep open communication with your manager about what you can and can’t handle. Be honest with them and yourself! Shortly after my diagnosis, I was asked to train newly hired employees. Prior to Lyme treatment, that would’ve been easy; trying to do it during treatment was a mess. I was having a difficult time remembering how to do simple tasks I’d done daily for the past 9 years, so trying to teach a brand new hire was almost impossible!

Know when to quit. This one is easier said than done—especially if you’re like me, and, prior to Lyme, enjoyed your job. It wasn’t until I stopped working did I realize how much it was having a negative affect on my health. I rarely had time to take my mid-day medications (even though I’d repeatedly expressed the importance of a mid-day “medication” break), and some days I had to skip lunch. The stress was insane, and we all know stress does not promote healing. About a year into treatment, I was asked to increase my hours (I said no), and inappropriate comments like “I didn’t think this would be going on for this long” started occurring. Those things should have been a big red flag for me to quit or talk with a human resource rep, but like a typical Midwesterner, I hesitated because I didn’t want to let my employer down! If you physically, mentally, or emotionally can’t handle your job, it’s important to realize it and make a change. Your health is worth it!

Know that if you stop working, something better will be waiting for you. At first, not working was really weird for me. Instead of taking the time to rest and focus on my health, I immediately started taking on projects around my house and volunteered to help others. I had a lot of my self-worth wrapped up in my job. I felt lazy and lame for not working! It took a relapse and several difficult months before I realized the importance of focusing on healing and doing everything possible to get better, even if that meant not doing much! Not doing much is something I still struggle with occasionally, but I’ve slowly learned to embrace a new pace of life that focuses on taking care of myself first. I’ve also learned that working outside the home (I still work at home everyday!) doesn’t determine how good of a person I am. Instead, I’m thankful I finally have time to study to become a nutrition consultant, and I’m excited for what the future holds!

How about you, did you keep working when you were diagnosed? If you were able to continue, did you have support from your employer and co-workers? Did you have to modify your schedule? Did you stop working and were you able to restart?

3 thoughts on “Should I Work During Lyme Treatment?”

I wish I had read this six months ago! Quitting work is so hard! I felt like I was forfeiting a major portion of my life, but I knew that I didn’t have a choice. I had needed to leave for months, but I had made it work. I gave every ounce in me to perform well at work, but as soon as I drove off I was almost holding my breath to make it home safely. I spent evenings in a dark room trying to recover before going back in the next morning. I should have left when I started living like that.

Just like you, as soon as I left I realized how sick work was making me. This post really assured me that I did the right thing, and that it was right to be sad about it, and that it is okay that I can’t hold my job during treatment.
I had someone ask me if I was undergoing Chemo. It was nice to have someone recognize how significant this treatment is.
Anyway. Thanks a lot.

This post described exactly what I am experiencing. I am working full time, and this is my third relapse. I finally am realizing it’s most likely because during the first two treatments I too would skip the meds or lower the dose because I had to make sure I could perform. This time around I have decided that I come first. I have disclosed that I am starting Lyme treatments. This go around I will not back down on treatment, and will put my self first. Thank you for this article, its refreshing to know that their is a community that can relate:-). Best of luck in your venture!

This is my life! I’ve tried to explain it to people but never can get the words right to describe it! Going back to work Friday because not having and income isn’t an option but this really helped me. Did you take any supplements that helped?